Practical Activities and Home IV's

J

jena

New member
Thank you this is some good information. He's been counting down the days until his birthday since the end of summer and is super-excited. It makes me sick to my stomach to (on top of everything else) make him wait 2-3 weeks for his birthday. He's already pissy about the extra treament and being back on TOBI I mean I guess I could still have it, but the bounce house would be out (and that is a huge part of his excitement... been talking about it nonstop). We could rent the bounce house afterwards. Still a dissapointment. Once we get his culture results in, I am going to explore the possibility of keeping his party the same BUT pushing the tuneup back a week. Of course I don't want to risk his health, but I am wondering if waiting a week would hurt him (as long as he is still feeling good and continuing his TOBI). It's a dark cloud hanging over our heads right now as we wait for his culture results AND/OR his repeat PFTs in 2 weeks. I wish I just KNEW one way or the other. This waiting is such a pain. And then he just keeps going on and on about his birthday because he just can't wait.

Still hoping for more replies from all parents and cfers. I am still curious for more information about school attendance while on Home ivs
Thank you all...
Darla
 
J

jena

New member
Thank you this is some good information. He's been counting down the days until his birthday since the end of summer and is super-excited. It makes me sick to my stomach to (on top of everything else) make him wait 2-3 weeks for his birthday. He's already pissy about the extra treament and being back on TOBI I mean I guess I could still have it, but the bounce house would be out (and that is a huge part of his excitement... been talking about it nonstop). We could rent the bounce house afterwards. Still a dissapointment. Once we get his culture results in, I am going to explore the possibility of keeping his party the same BUT pushing the tuneup back a week. Of course I don't want to risk his health, but I am wondering if waiting a week would hurt him (as long as he is still feeling good and continuing his TOBI). It's a dark cloud hanging over our heads right now as we wait for his culture results AND/OR his repeat PFTs in 2 weeks. I wish I just KNEW one way or the other. This waiting is such a pain. And then he just keeps going on and on about his birthday because he just can't wait.

Still hoping for more replies from all parents and cfers. I am still curious for more information about school attendance while on Home ivs
Thank you all...
Darla
 
J

jena

New member
Thank you this is some good information. He's been counting down the days until his birthday since the end of summer and is super-excited. It makes me sick to my stomach to (on top of everything else) make him wait 2-3 weeks for his birthday. He's already pissy about the extra treament and being back on TOBI I mean I guess I could still have it, but the bounce house would be out (and that is a huge part of his excitement... been talking about it nonstop). We could rent the bounce house afterwards. Still a dissapointment. Once we get his culture results in, I am going to explore the possibility of keeping his party the same BUT pushing the tuneup back a week. Of course I don't want to risk his health, but I am wondering if waiting a week would hurt him (as long as he is still feeling good and continuing his TOBI). It's a dark cloud hanging over our heads right now as we wait for his culture results AND/OR his repeat PFTs in 2 weeks. I wish I just KNEW one way or the other. This waiting is such a pain. And then he just keeps going on and on about his birthday because he just can't wait.

Still hoping for more replies from all parents and cfers. I am still curious for more information about school attendance while on Home ivs
Thank you all...
Darla
 
J

jena

New member
Thank you this is some good information. He's been counting down the days until his birthday since the end of summer and is super-excited. It makes me sick to my stomach to (on top of everything else) make him wait 2-3 weeks for his birthday. He's already pissy about the extra treament and being back on TOBI I mean I guess I could still have it, but the bounce house would be out (and that is a huge part of his excitement... been talking about it nonstop). We could rent the bounce house afterwards. Still a dissapointment. Once we get his culture results in, I am going to explore the possibility of keeping his party the same BUT pushing the tuneup back a week. Of course I don't want to risk his health, but I am wondering if waiting a week would hurt him (as long as he is still feeling good and continuing his TOBI). It's a dark cloud hanging over our heads right now as we wait for his culture results AND/OR his repeat PFTs in 2 weeks. I wish I just KNEW one way or the other. This waiting is such a pain. And then he just keeps going on and on about his birthday because he just can't wait.

Still hoping for more replies from all parents and cfers. I am still curious for more information about school attendance while on Home ivs
Thank you all...
Darla
 
J

jena

New member
Thank you this is some good information. He's been counting down the days until his birthday since the end of summer and is super-excited. It makes me sick to my stomach to (on top of everything else) make him wait 2-3 weeks for his birthday. He's already pissy about the extra treament and being back on TOBI I mean I guess I could still have it, but the bounce house would be out (and that is a huge part of his excitement... been talking about it nonstop). We could rent the bounce house afterwards. Still a dissapointment. Once we get his culture results in, I am going to explore the possibility of keeping his party the same BUT pushing the tuneup back a week. Of course I don't want to risk his health, but I am wondering if waiting a week would hurt him (as long as he is still feeling good and continuing his TOBI). It's a dark cloud hanging over our heads right now as we wait for his culture results AND/OR his repeat PFTs in 2 weeks. I wish I just KNEW one way or the other. This waiting is such a pain. And then he just keeps going on and on about his birthday because he just can't wait.

Still hoping for more replies from all parents and cfers. I am still curious for more information about school attendance while on Home ivs
Thank you all...
Darla
 
K

karon72

New member
Jena,

My 5 year old (almost 6) just came home yesterday from the hospital for her "tune up". She is on Tobi (takes 60 minutes through PICC) & Ceftadazime (takes 30 minutes) through her IV. For her, Tobi is once a day & the other every 8 hours. Depending on how she feels, we will send her to school on Monday. She will have been on IV antibiotics for one week then. I will pick her up early everyday right before recess & PE. I am concerned about her going to school, but she has already been out two weeks due to being sick & then her hospital stay. We are going to have her wear long sleeves or cover her PICC somehow.

I talked to the school nurse & her teacher today before she returns to school on Monday. They both feel comfortable with her there & I so do I. We want her to get back into her normal routine as soon as possible. I will let you know how school went next...this is our first time.

Hope he feels better soon,
 
K

karon72

New member
Jena,

My 5 year old (almost 6) just came home yesterday from the hospital for her "tune up". She is on Tobi (takes 60 minutes through PICC) & Ceftadazime (takes 30 minutes) through her IV. For her, Tobi is once a day & the other every 8 hours. Depending on how she feels, we will send her to school on Monday. She will have been on IV antibiotics for one week then. I will pick her up early everyday right before recess & PE. I am concerned about her going to school, but she has already been out two weeks due to being sick & then her hospital stay. We are going to have her wear long sleeves or cover her PICC somehow.

I talked to the school nurse & her teacher today before she returns to school on Monday. They both feel comfortable with her there & I so do I. We want her to get back into her normal routine as soon as possible. I will let you know how school went next...this is our first time.

Hope he feels better soon,
 
K

karon72

New member
Jena,

My 5 year old (almost 6) just came home yesterday from the hospital for her "tune up". She is on Tobi (takes 60 minutes through PICC) & Ceftadazime (takes 30 minutes) through her IV. For her, Tobi is once a day & the other every 8 hours. Depending on how she feels, we will send her to school on Monday. She will have been on IV antibiotics for one week then. I will pick her up early everyday right before recess & PE. I am concerned about her going to school, but she has already been out two weeks due to being sick & then her hospital stay. We are going to have her wear long sleeves or cover her PICC somehow.

I talked to the school nurse & her teacher today before she returns to school on Monday. They both feel comfortable with her there & I so do I. We want her to get back into her normal routine as soon as possible. I will let you know how school went next...this is our first time.

Hope he feels better soon,
 
K

karon72

New member
Jena,

My 5 year old (almost 6) just came home yesterday from the hospital for her "tune up". She is on Tobi (takes 60 minutes through PICC) & Ceftadazime (takes 30 minutes) through her IV. For her, Tobi is once a day & the other every 8 hours. Depending on how she feels, we will send her to school on Monday. She will have been on IV antibiotics for one week then. I will pick her up early everyday right before recess & PE. I am concerned about her going to school, but she has already been out two weeks due to being sick & then her hospital stay. We are going to have her wear long sleeves or cover her PICC somehow.

I talked to the school nurse & her teacher today before she returns to school on Monday. They both feel comfortable with her there & I so do I. We want her to get back into her normal routine as soon as possible. I will let you know how school went next...this is our first time.

Hope he feels better soon,
 
K

karon72

New member
Jena,

My 5 year old (almost 6) just came home yesterday from the hospital for her "tune up". She is on Tobi (takes 60 minutes through PICC) & Ceftadazime (takes 30 minutes) through her IV. For her, Tobi is once a day & the other every 8 hours. Depending on how she feels, we will send her to school on Monday. She will have been on IV antibiotics for one week then. I will pick her up early everyday right before recess & PE. I am concerned about her going to school, but she has already been out two weeks due to being sick & then her hospital stay. We are going to have her wear long sleeves or cover her PICC somehow.

I talked to the school nurse & her teacher today before she returns to school on Monday. They both feel comfortable with her there & I so do I. We want her to get back into her normal routine as soon as possible. I will let you know how school went next...this is our first time.

Hope he feels better soon,
 
E

Emily65Roses

New member
I can't be too helpful with the exacts of a 7 year old...

A port is surgically implanted. So if he doesn't have one, then it'll be a PICC line. (Peripherally Inserted Central Catheter). They put it in the elbow usually, and then fish the line up the arm, around the shoulder, and into the heart. Then they tape it down. I think the bouncey would be okay, as long as you kept an eye on him. And as long as he knows that he has to be careful with the line (I don't know exactly where a 7 year old is developmentally -- so that's your call -- if you think he'll properly understand how careful he has to be, then let him. If not, then skip it, or move the party).

The doses depend on what meds he's on. My doses have been anywhere from every 12 hours, to every 4. Generally it's every 6 or 8 (mine have most commonly been every 8 hours).

But my general two cents is as follows:
The only real across-the-board restrictions are no swimming, and no full-on showering. Other than that, it's a matter of common sense, and obviously don't pull on it or anything.

I do everything normally while on IVs. I go to school, I went to work (when I had a summer job ***). I don't want to overshare, but just to give you an idea, I've had sex on IVs. Many times. So it's not like he can't do anything, you just have to be careful and use some common sense.

*** <i>Let me add here, I worked at a deaf school with elementary school-age kids. So it was around the same age that his peers are. The kids are generally very curious, but as long as he has a decent explanation to give them, they don't think anything of it. I explained to the kids that I had special medicine that I had to have through an IV (and I showed them my port, so they could see where the line was going when it went under my shirt), and they said "oh okay!" and went back to playing.
I used to tell Mike's baby cousins (2 and 4) that I had special medicine that I needed through my skin, but that they had to be very careful, because it hurt me if it got pulled on. They were very good about it. Once Syd (the 4 year old) stepped on it and she noticed it before I did. She said she was very sorry and immediately jumped off before I could even open my mouth.</i>
 
E

Emily65Roses

New member
I can't be too helpful with the exacts of a 7 year old...

A port is surgically implanted. So if he doesn't have one, then it'll be a PICC line. (Peripherally Inserted Central Catheter). They put it in the elbow usually, and then fish the line up the arm, around the shoulder, and into the heart. Then they tape it down. I think the bouncey would be okay, as long as you kept an eye on him. And as long as he knows that he has to be careful with the line (I don't know exactly where a 7 year old is developmentally -- so that's your call -- if you think he'll properly understand how careful he has to be, then let him. If not, then skip it, or move the party).

The doses depend on what meds he's on. My doses have been anywhere from every 12 hours, to every 4. Generally it's every 6 or 8 (mine have most commonly been every 8 hours).

But my general two cents is as follows:
The only real across-the-board restrictions are no swimming, and no full-on showering. Other than that, it's a matter of common sense, and obviously don't pull on it or anything.

I do everything normally while on IVs. I go to school, I went to work (when I had a summer job ***). I don't want to overshare, but just to give you an idea, I've had sex on IVs. Many times. So it's not like he can't do anything, you just have to be careful and use some common sense.

*** <i>Let me add here, I worked at a deaf school with elementary school-age kids. So it was around the same age that his peers are. The kids are generally very curious, but as long as he has a decent explanation to give them, they don't think anything of it. I explained to the kids that I had special medicine that I had to have through an IV (and I showed them my port, so they could see where the line was going when it went under my shirt), and they said "oh okay!" and went back to playing.
I used to tell Mike's baby cousins (2 and 4) that I had special medicine that I needed through my skin, but that they had to be very careful, because it hurt me if it got pulled on. They were very good about it. Once Syd (the 4 year old) stepped on it and she noticed it before I did. She said she was very sorry and immediately jumped off before I could even open my mouth.</i>
 
E

Emily65Roses

New member
I can't be too helpful with the exacts of a 7 year old...

A port is surgically implanted. So if he doesn't have one, then it'll be a PICC line. (Peripherally Inserted Central Catheter). They put it in the elbow usually, and then fish the line up the arm, around the shoulder, and into the heart. Then they tape it down. I think the bouncey would be okay, as long as you kept an eye on him. And as long as he knows that he has to be careful with the line (I don't know exactly where a 7 year old is developmentally -- so that's your call -- if you think he'll properly understand how careful he has to be, then let him. If not, then skip it, or move the party).

The doses depend on what meds he's on. My doses have been anywhere from every 12 hours, to every 4. Generally it's every 6 or 8 (mine have most commonly been every 8 hours).

But my general two cents is as follows:
The only real across-the-board restrictions are no swimming, and no full-on showering. Other than that, it's a matter of common sense, and obviously don't pull on it or anything.

I do everything normally while on IVs. I go to school, I went to work (when I had a summer job ***). I don't want to overshare, but just to give you an idea, I've had sex on IVs. Many times. So it's not like he can't do anything, you just have to be careful and use some common sense.

*** <i>Let me add here, I worked at a deaf school with elementary school-age kids. So it was around the same age that his peers are. The kids are generally very curious, but as long as he has a decent explanation to give them, they don't think anything of it. I explained to the kids that I had special medicine that I had to have through an IV (and I showed them my port, so they could see where the line was going when it went under my shirt), and they said "oh okay!" and went back to playing.
I used to tell Mike's baby cousins (2 and 4) that I had special medicine that I needed through my skin, but that they had to be very careful, because it hurt me if it got pulled on. They were very good about it. Once Syd (the 4 year old) stepped on it and she noticed it before I did. She said she was very sorry and immediately jumped off before I could even open my mouth.</i>
 
E

Emily65Roses

New member
I can't be too helpful with the exacts of a 7 year old...

A port is surgically implanted. So if he doesn't have one, then it'll be a PICC line. (Peripherally Inserted Central Catheter). They put it in the elbow usually, and then fish the line up the arm, around the shoulder, and into the heart. Then they tape it down. I think the bouncey would be okay, as long as you kept an eye on him. And as long as he knows that he has to be careful with the line (I don't know exactly where a 7 year old is developmentally -- so that's your call -- if you think he'll properly understand how careful he has to be, then let him. If not, then skip it, or move the party).

The doses depend on what meds he's on. My doses have been anywhere from every 12 hours, to every 4. Generally it's every 6 or 8 (mine have most commonly been every 8 hours).

But my general two cents is as follows:
The only real across-the-board restrictions are no swimming, and no full-on showering. Other than that, it's a matter of common sense, and obviously don't pull on it or anything.

I do everything normally while on IVs. I go to school, I went to work (when I had a summer job ***). I don't want to overshare, but just to give you an idea, I've had sex on IVs. Many times. So it's not like he can't do anything, you just have to be careful and use some common sense.

*** <i>Let me add here, I worked at a deaf school with elementary school-age kids. So it was around the same age that his peers are. The kids are generally very curious, but as long as he has a decent explanation to give them, they don't think anything of it. I explained to the kids that I had special medicine that I had to have through an IV (and I showed them my port, so they could see where the line was going when it went under my shirt), and they said "oh okay!" and went back to playing.
I used to tell Mike's baby cousins (2 and 4) that I had special medicine that I needed through my skin, but that they had to be very careful, because it hurt me if it got pulled on. They were very good about it. Once Syd (the 4 year old) stepped on it and she noticed it before I did. She said she was very sorry and immediately jumped off before I could even open my mouth.</i>
 
E

Emily65Roses

New member
I can't be too helpful with the exacts of a 7 year old...

A port is surgically implanted. So if he doesn't have one, then it'll be a PICC line. (Peripherally Inserted Central Catheter). They put it in the elbow usually, and then fish the line up the arm, around the shoulder, and into the heart. Then they tape it down. I think the bouncey would be okay, as long as you kept an eye on him. And as long as he knows that he has to be careful with the line (I don't know exactly where a 7 year old is developmentally -- so that's your call -- if you think he'll properly understand how careful he has to be, then let him. If not, then skip it, or move the party).

The doses depend on what meds he's on. My doses have been anywhere from every 12 hours, to every 4. Generally it's every 6 or 8 (mine have most commonly been every 8 hours).

But my general two cents is as follows:
The only real across-the-board restrictions are no swimming, and no full-on showering. Other than that, it's a matter of common sense, and obviously don't pull on it or anything.

I do everything normally while on IVs. I go to school, I went to work (when I had a summer job ***). I don't want to overshare, but just to give you an idea, I've had sex on IVs. Many times. So it's not like he can't do anything, you just have to be careful and use some common sense.

*** <i>Let me add here, I worked at a deaf school with elementary school-age kids. So it was around the same age that his peers are. The kids are generally very curious, but as long as he has a decent explanation to give them, they don't think anything of it. I explained to the kids that I had special medicine that I had to have through an IV (and I showed them my port, so they could see where the line was going when it went under my shirt), and they said "oh okay!" and went back to playing.
I used to tell Mike's baby cousins (2 and 4) that I had special medicine that I needed through my skin, but that they had to be very careful, because it hurt me if it got pulled on. They were very good about it. Once Syd (the 4 year old) stepped on it and she noticed it before I did. She said she was very sorry and immediately jumped off before I could even open my mouth.</i>
 
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